Rachael is sleeping after being examined twice already this morning. I'm hoping it's because she was so tired but she seems to be hurting more today. The catheter site is hurting her but it's not warm and she does not have a fever. Maybe it's because of the adhesive. Maybe because the stitches were ripped out. Maybe it's something more, but it wasn't even that painful the day they put it in so I'm concerned.
We are waiting again. This time it's for anesthesiology. We have to see if they have an opening today. That sentence was painful to even write. "See if they have an opening." If they don't, we're here AT LEAST another overnight, possibly two. If they can get her in today then we'll probably have to stay one more night. As we wait she cannot eat. Again.
I met another mom a couple days ago and she said that she was in the middle of one of her shorter hospital stays. "So far," she says, "it's only been 11 weeks." God.
I would ask her how she does it but of course the answer is what choice does she have? I met another mom with TWO children with cystic fibrosis. She has to split time between two hospital rooms at times. And even this woman says that she can frequently look across the hall and be thankful her child doesn't have what the kid in the next room has.
There is a six-month old baby in the room next to Rachael's. She is awaiting a liver transplant and the nurses lovingly call her their "glow worm". She is so yellow it is honestly frightening. She has been there since birth.
So yeah, four days so far. It's hard and it's not fair and Rachael is too young but she is in the company of so many children... so many... who would trade places with us for anything.
Today, when you think of Rachael and pray for her, remember the other kids. Is there even enough prayer out there to compete with the suffering?
Yesterday I saw a family coming in to visit another child and there was a girl just a little older than Rachael visiting. She had on a pretty dress and cute shoes and her hair was freshly washed and in braids and it was the first time I felt a pang of jealousy that my child isn't as healthy. I don't think I took my kids health for granted but I miss being mostly unaware of the suffering. I miss thinking bad stuff doesn't happen to us. I miss having a carefree daughter who would think a visit to the hospital is an adventure.
Our lives are different now but what of those families who don't have a church family loving them? What of those families who don't even have enough faith to afford the luxury of questioning? What of those families who don't have hope of leaving shortly after Day 4? Remember them today.
19 hours ago